Sunday, May 17, 2009

one of the lows

It is always my intention to be real here - to show both sides - the downs along with the ups, the valleys along with the mountain tops. And I will tell you this about myself - I am not stable. What I mean is this: For me grief or suffering or going through this (whatever you want to call it) is a roller coaster. It's how I deal. I'll have two or three days of really up and high, and then I'll sink back down. I think Matt, on the other hand, is experiencing a more steady, constant emotion (whatever you want to call it). Regardless, it sucks for both of us, and we're having a hard time.

Usually, I keep the prayer requests centered on Jonah, but tonight I'm asking for prayers for Matt and myself. Without going in to too much detail, I just feel Satan's demons around us like I have only a few times in our marriage. This is a big thing we're trying to wade through - and we're stressed and exhausted and on edge. We need help. But here's the kicker (and I'm only speaking for me here, not for him): I don't really want to talk to the only One who can really give me the help I need. I'm ticked, and I'm pouting. And I don't want to talk about it. I have nothing to say. And frankly, I'm having some trust issues right now. It comes down to this - Right now, I don't trust God enough to pray for a healing. And it pisses me off that I have to pray, "Please God. Make it ONLY just blisters." (You know, the painful, big blisters that leave a wound equivalent to a third degree burn. Make is JUST that.) Should any parent ever have to pray that? Messed up. Wrong. UNFAIR.

I was reading Ephesians 6 tonight (but let me be clear, I am rarely ever reading my Bible these days), but I was looking for the verse that was only vaguely in my head: "Our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms." That is no joke. We are in the scariest, most horrible war ever imagined. And we are just moseying along like nothing's going on. We take the good as coincidence and take the bad and blame it on God. But this is war, and right now, I feel like I'm on the losing side.

It goes on to talk about the armor of God (you know, the cute suit you drew and labeled in Sunday school when you were a kid). "Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints." Unfortunately, my shield is pretty flimsy, and I've definitely dropped my sword. Most moments, I feel completely defenseless, and offense is out of the question. I'm in the midst of the demons with only my bare skin.

I'm tempted to turn off comments to this post, only because I just can't hear right now the words "inspiration" or "strong" or "example." I am none of those things. I am a stinkin' sinner who has done a whole lot of wrong and is currently reaping a lot of repercussions of those bad choices (no, I'm not talking about God punishing me by giving Jonah EB - I know that is not the case). Please, if you choose to leave a comment, either let it be a prayer for us, for Jonah, or giving God the glory. Because I am sure not praising Him for any of this right now. We are on break. Please, please do not tell me how great I am. You are limited in the view you have of me. There's a lot here that's dark and gross and evil. The only goodness in me is that of Jesus. And right now, I'm not letting it shine out. I want to be radiant. I want to be actively participating (and excited about it) on the winning side. Because I know what side ultimately wins. I'm just too tired and beaten down to help fight. I want to stay here in this corner and be angry.

We are hard pressed on every side...
Perplexed...
Persecuted...
Struck down...

Someday soon I want to be able to honestly say and believe the rest.
...but not crushed
...but not in despair
...but not abandoned
...but not destroyed.

246 comments:

1 – 200 of 246   Newer›   Newest»
Anonymous said...

I rarely comment on blogs but surely God has big enough shoulders to understand why you are mad at him. I was on the outs with god after my son died, and I think that it is OK. Not just for God but for you. Isn't it better to be mad at God than at Matt, or the doctor's or whatever. You have to explain your anger to them, but not to God. You can be mad and then be done and you feel better....and God understands and loves unconditionally
Sue

Faithe said...

Patrice and Matt...I cannot relate to the EB you are dealing with, so therefore cannot even begin to know what you are going through. But God does. He made you, gave you your emotions, He knows EXACTLY what you've been going through for months now --- 24/7. And He knows you are beaten down, feel forsaken, discouraged, etc., etc., etc. And He still loves you no matter what you say to Him. It does not hurt Him for you to express your deepest feelings (hurts, anger, loneliness, whatever) to Him.
Know that you are being held up in prayer by MANY people, and we will continue to hold you up to the throne of grace and mercy. The Lord WILL see you through. I just wish I lived close to you and could help you physically in some way. But I'm in PA...and will pray that the Lord will send in other angels of mercy that can help to lift the load in some way.
I love you, dear sister (and brother), and want you to know I feel your pain.

singing mama said...

Praying for you three and your bare broken and raw heart at this time!

God is faithful - I dont know much, but that I know for sure!

Luv singingmama

Julie said...

I'm praying for all of you. I can only imagine all that you are dealing with every single day. Please know that there are lots of thoughts and prayers with you.

Anonymous said...

i read your blog every day from Perth in Australia and this is the first tme I am ever leaving a response. I believe that is ok to voice your anger towards God. He knows it anyway. As good friends do (and he is a friend to us), we have to be able to say the good, the bad and the painful in order to let our relationship grow and move on to the next level.
I cant imagine your pain and I suffering or even the place you are in. But i do know that I have been angry with God for things that have happened to me.
Go easy on yourself and remind yourself that this is a season of how you feel. It may change next week, next month or next year but GOd understands and loves you anyway.

My thoughts and prayers from Australia are with you constantly
Cheree
xx

JenniferNe said...

The only thing I can say is I will pray for you and Matt. Please God be with you at this time of need. I wish there was something I could do to help. Just know that you are not alone.

Ali said...

Just wanting you to know that I am thinking about you and your family right now. I hope this passes.

From Charlotte-

Rochel said...

praying

jandkland said...

I hear you, Patrice. I've never been through such an experience, but I follow enough families who've walked a similar journey, and situations like the one you live are the source of my biggest issue with God. I don't know how to resolve it, but I did want you to know that I think of you OFTEN. And if you and Matt need help other than going directly to our God, I think you should take advantage of skilled people God has gifted who know how to help couples in desperate times like these. Many times we need to dialogue with someone whose respond we can hear audibly, whose facial expressions we can see, and whose arms we can feel around us.

--Kelley in GA (queenkelley.com)

Jill said...

Patrice, I've been reading your blog since Jonah was born and this will be my first comment as well. My daughter was born 2 years ago with spina bifida, which we didn't know about before hand. I rode that same rollar coaster of emotions that you are on right now. I was so mad/hurt that God would allow this to happen to her. My marriage suffered tremendously. I always wanted someone my age to talk to about what I was feeling, but I never had it. I can be that person for you, if you need it.

Heather from Ontario Canada said...

This morning during milking I was thinking of you. Your situation made me think of Jobs. satan is powerful but God is MORE powerful. I'm praying for you all.

Jeanie said...

I'm not a regular commenter....but I just wanted you to know that I will be praying in Kansas.
Heavenly Father,
This morning I ask that you give Patrice and Matt a sense of peace. Please let them feel that you are in control in the midst of their lack of control over Jonah's EB. Bless their commitment to marriage. In Jesus Precious Name, Amen.
Hugs to you honey! I know you didn't want to hear it...but you are special!

C. said...

A former Young-Lifer, who has been where you are right now - not having lived through what you have - know that we are all here to pick up our swords and shields and rally around you in Faith. Until you are able to hold your own, we will guard you in prayer. Praying for you all - you are not alone.

Beav's Wife said...

I would be angry too. I would be disappointed, ticked, fearful, unsure, everything that you've said... I read your blog as does my best friend and you come up when we're talking all the time. We wonder how we would feel. We wonder how you manage to be so funny (seriously you crack us up!) and understanding of your situation. You are only human and God knows that just as we all do. We may not all know you personally but we are thinking of you and praying for you. Sending you much love and hugs...Jenny

Granna said...

This is what your brothers and sisters in Christ are for. When you aren't able to pray we should be here to stand in the gap for you. We are ALL sinners in need. Your need is just very great right now. I'll be praying for you and your family.
Love,
Donna in Texas

Melissa said...

Okay...I won't tell you the things you don't want to hear. What I will tell you is the truth...all of us who have children with major conditions feel this way at some point. How you come through it depends on what you do about it. There was a time in my life where I decided that since God hadn't 'fixed' everything with Bryson, that He must just not give a hoot about us anymore. I turned my back on Him completely. Refused to go to church, refused to open a Bible, refused to acknowledge His existance. Went downright into the "God doesn't exist" phase. Life was not good. I was not happy. But at the time I didn't put 2 and 2 together. Now, I've come full circle. No, I still haven't found a church that I want to attend full-time, and I've really never read the Bible like some have. But, I've gotten to a point where I realize He really is there, and I see Him in just about everything. And I've reached a point where I realize that even if we don't get what we ask for, in the way we expect it, He's there. I know it's cliche' to say "God works in mysterious ways", but honestly, over the years I've found it to be true. We often don't understand what's going on or why it's going on, or why we can't have it the way 'we' want it. That's where faith comes in...faith that there is a reason even if we don't see it or understand it. And when your faith is at it's lowest point is when you have to find it again. It may be difficult, but it's necessary. And sometimes you just have to completely surrender and decide that though you don't understand now, you will trust God to have a reason for everything. Sometimes you have to just give up on knowing the answers right now or gaining understanding right at this point and trust that some day you will understand...

Hang in there, know that we all love you guys and that we understand. We may not know EB, but several of us have gone through our own things that are just as difficult in their own ways. We've been there and felt the same way. And each of us has taken our own journey to get to where we are today.

Love & hugs,
Melissa

Sashka said...

I'm sorry you are hurting, Patrice. You and Matt have had to endure so much with your boys, on top of all the normal difficulties married couples have to go through. I'll be thinking of you often.

Meg said...

oh honey. my heart hurts for you. It is hard to be strong when the whole freaking world is coming apart at the seems. All relationships hit the crap after a baby, then to make it worse, you have a little man who needs all of your time. I will keep you in my prayers. ♥

Martin Family said...

Father God,
I can feel the pain in Patrice's request. I pray that in this time of great stress, struggle, and frustration, that You will comfort and give her and Matt some peace. Her prayers for her son are so heartfelt, and You understand that better than anyone here can. When the pits are deep and dark, let their light shine brightly to lead them out. Protect them from the evil of this world. Give them strength in their weakness. And Lord, it may not feel that way to them right now, but their lives DO glorify You. They have taken a situation that would have destroyed many people, and brought You glory in it. They know that Jonah is a gift. They know that through this journey, You will get the glory. But it doesn't make it any less painful. You gave us emotions, and You understand that it is sometimes hard to thank You for things that are so unfair in this life. Of course we aren't thankful for this struggle. We are thankful for Jonah and his beautiful spirit. We are thankful for Matt and his quiet strength. We are thankful for Patrice and her way with words that make those of us who are strangers, feel like part of their family. We are thankful for the promise of an eternity without pain, sickness, death. So today, as they struggle through the unknown and the hurt, lift them up. Let them FEEL Your presence in their hearts, in their home. And let them know that we love them and hurt with them for these struggles. Glory to God in the highest! Amen.

Erin said...

I cannot even imagine going through all that you and your husband have gone through..... Words are just not enough Praying for both of you and thank you for your total honesty in this post.

Anonymous said...

Oh I know that stubborness of not wanting to give it all to the only One who can begin to make it better. I'm there too. I will say a prayer for you, and I guess me while I'm at it.... Thank you for your honesty Patrice. I can't imagine the stress of all of this on your marriage.

Chris Hilton said...

Patrice,

I have been very concerned about YOU since the last time I was at your house and have mentioned it to several others. What I saw was the same thing I witnessed with my own daughters, Tiffany when she was overwhelmed with Charlie who wouldn’t sleep and cried persistently. Heather after the birth of her third, Coleman when it hit her that there were now THREE under five she had to care for 24/7. Yes, yours has an added health concern but the issue is the same. You are tired, stressed, concerned and searching for answers and relief.

I couldn’t sleep Friday night for thinking about you, Matt and your parents. I got up about 1:00 AM and wrote “Our Goals and Commitments” and posted it on Jonah’s Support Group blog. Went back to bed, tossed and turned all night, awoke around 6:00 AM with a thought rampaging through my brain. I got up and tried to put it into words, it was difficult. Then, I had something I thought worked and placed it at the bottom of the blog yesterday morning. I didn’t fully understand what it was all about then, but after reading this posting I do NOW.

Have you ever been hugged by God? I mean really honestly hugged by God? I have, many times. How does God hug? Think about it. You have been receiving God’s hugs since this all began and I am not sure that you realize that he hugged you. Has God every looked into your eyes and you realized, God is looking at me and he cares about me. I have. How does God look into our eyes? Think about it. You have been looking into the eyes of God since this all began. Look again, God is there!

Don’t get it? Go to Jonah’s Support Group blog and read at the very bottom of the page what I wrote the day before you posted this on your blog. How does God reach out and touch us?

Anonymous said...

Dear Patrice,
I am praying that you will experince relief from your grief and despair. But don't think you are the only deep and dark sinner out there. We all are, and we may not have been in your situation at all, but have been in some sort of turmoil with our faith and God. But all praises to God, for HE does love us and care for us and He WILL deliver you, Matt and precious Jonah from this. Day by Day. My heart aches for your despair, so please no we bloggers are all praying for a better day for you and yours!
Carol

Anonymous said...

I hear you!!!!!!
In Nov. my youngest was diagnosed with autism. i hated people who say that we were the best parents for this and God would only give the most special parents a special needs child!!! I hated God for using my child to teach others kindness, patience.... whatever. I screamed "God, you think I am this strong? Wow! you have the wrong person." I know if God asked me to carry the burden of a "broken" child I would have told him to his face "HELL no not my child you need to pick someone else. We have suffered enough."
*fell free to use those statements to God because he answered me*

I am and will never be whole. There is a part of me everyday that doesnt cry because well, can you have that many tears? i will not full understand any of this till I am in heaven and God shows me ALL that he used our child for. I am sure that in that moment I will fall at my savoirs feet in shame because even when I know all that God has been blessed and the people that have been changed because of Hudson I am sure i would still say NOT MY CHILD!!!
My family has been completly changed to deal with the diagnosis as a Know yours has. It is hard and i am sorry and pray for joy for your family. I pray for peace and understanding. I pray for strength and love. I pray for your marriage because you need it. I pray for healing!!!! (which i know comes in many forms and you will understand that also)
i have a silver bracelet with the vs Jer 29:11 "For I know the plans I have for you." some days I am like Realy, this is the plan you have for me this is for good and not to harm. ARE YOU KIDDING ME. Then other days I find myself in a moment of blessings and thank God for the plan.
jennifer (Hudson's mom)

Becky Vaughn said...

Lord I pray you would wrap your big strong arms around my sister and brother. I've walked thru the valley of the shadow of death with you and I know the pain I felt was more than I felt I could bare but for You.... Strengthen them and Lord as a fellow soldier may I come, come and stand with them against the enemy. Patrice know that you a part of a large army. I love 2 Kings 6:15 "When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. "OH, my lord, what shall we do?" the servant asked. "Don't be afraid," the prophet answered. "Those who are with us are more than thos who are with them." And Elisha prayed, "O Lord, open his eyes so he may see." Then the Lord opened the servant's eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha." Lord open Patrice and Matt's eyes that they might see your vast army surrounding them. The Lord as sent His army to surround you with our swords and our shields. Rest in the Lord. We will take this watch.

Pogue Mahone said...

I know how you feel; the helplessness, despair, anger, uncertainty; the asking "Why me? why us?"It really IS unfair. When our son had leukemia we went thru the exact same roller-coaster. It WAS my faith and trust in God that got me thru and He WILL carry you thru and give you strength you never knew you had.He hasn't forsaken you,even though at times it feels that way. You are in my prayers.

Tricia said...

I am praying for you. Sometimes I feel guilty, because when I come across needs like yours, I am more inclined to pray for the parents, knowing that everyone else is praying for the child. I asked some really hard questions on my blog yesterday, too. God is good and He will bring you through this. He loves you and Matt immensely.

Anonymous said...

I think it is perfectly natural for you to be angry with God. You are human and a mother who is very worried about your baby. I tend not to fall into a religious category, but I am very much a believer of God. As long as you do not deny him you can punch and hit at him and he will still hold you close. Don't beat yourself up. These feelings do not make you weak. My cousin has a daughter born with Down Syndrome and had severe heart defects. When she was born they didn't think she would make it and two months old had open heart surgery. Not only did they get angry with God, they got angry with each other. Jonah needs both parents and sometimes that means stepping aside from all the medical stuff and doing something with just the two of you and talking about something other than Jonah and the medical issues (I know this is hard, but it is necessary for the two of you).

I found this poem and thought it might lift you up a bit:

God Sent to Me an Angel

Written by Paul Dammann

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Anonymous said...

MIghty God, I ask you to meet Patrice and Matt in a bold way right now, and speak to them of your tender love, and sufficiency for them and their boys. You know their weakened, sleep deprived state. Graciously whisper to them of your care for them. You love them in a bigger and more perfect way then they even love their boys. Minister to them in this day.
Ginny

Anonymous said...

***URGENT***
Sounds like you are in desparate need of some antidepressants. Call your doctor first thing in the morning. Your brain chemistry from stress and grief is all messed up (not to mention postpartum hormone changes) The extreme ups and downs is definitely indicative of that. I know what I'm talking about!
Rhonda

Anonymous said...

Praying for you and your beautiful family from Dubai.

Tribulation said...

sweetie, you are not alone in feeling this way. it happens to all of us at some point. and you both have been through a WHOLE HUGE thing. it is perfectly acceptable that you should feel this way. God understands your need to vent or pout or rant and rave. i was diagnosed with chronic clinical depresion 6 years ago. we tried different medications and nothing worked. they basically turned the depression to anger, which i did not want at all. i finally came to the realization that the only "cure" was Jesus. now i still have my moments where i feel like He is stil sooo far away and i am merely an observer of His gifts rather than a reciever, but it is better. you literally have to take it one minute one day at a time. and pray constantly, even if its just " God, so help me...." and there have been several times i have fallen to my knees weepingn and crying out to Him " God, i just cant do this alone anymore. I need YOU." and without fail, He is right there. all i had to do was call out His name. Hold on to God sweetheart. He will get you through this. and you have a HUGE team of prayer warriors who are constantly praying for you and your family. we havent only been praying for your lttle boy. if the others are like me, they have been praying for you and matt from the beginning.

lots of love and prayers to you and your family.

Tina Thompson

Melissa said...

I pray for your family. I can say I would feel this way also if I were in your shoes. You have every right to be angry, you and your husband and have been dealt some pretty tough hands.

One good thing came of this, you have baby Jonah to love and care for and I know you are grateful for that.

Take care of yourself. Don't conquor this alone, ask for help when needed, this is the time to accept the help you are offered.

Brandi @ Raising Arrows said...

In your weakness, HE is STRONG! In your weary moments, we can all intercede and hold up that armor for you and your family! My Pastor calls it "armor bearing". I commit to you, sweet sister in Christ, to spiritually speaking, hold up your armor for you in prayer. Prayerfully coming against what means to bring you despair and chaos.
Thank you for being REAL, OPEN & HONEST!

Nikki said...

Praying for you today. I can't say I can directly relate, but I know after losing our first child I did ALOT of yelling at God... or more appropriately, yelling at my pastor about how cruel God was. Now, I know that's not the case... I know that He is good, that He loves us, that He will not ever, ever forsake us -- but I was angry. ANGRY. I'll be praying specifically for mentors and friends to surround you and lift you up when you can't do it for yourselves. Let them help you... don't shut them out.

Love to you,
Nikki in Colorado

Rachel said...

Patrice,

I understand. You know I still get so angry with the Lord. I still want to lay on my tummy, kicking the ground like a 2yr old in a tantrum and scream "It isn't fair". I don't pray everynight like I should. I just sometimes am too far down in a funk to do it. It is okay.

I wish I could give you and me and every other bereaved mamma a "Get out of jail free card". I so think that every mom that has to endure a loss should just not have to deal with anything negative ever again. I feel that we have had the absolute worse thing, times a million, happen to us and don't deserve any other bad thing to happen. No speeding tickets, or rude people, or debt, or pain, or a sick child, etc...NOTHING! We have paid our dues. So, if I could I would make you a Get Out of Jail Free Card...although I don't think anyone would take it seriously...but if I could, I would.

Rachel
mommy to ^Jaxon^ ^Colin^ and ^Courtney^

Erma J said...

What you are going thru is "living grief". My mil said that many times about things and I know it to be true.
Erma J

Anonymous said...

I also think that it's time for your to visit your doctor to talk about depression.

Post partum depression is a scary thing, don't put off a visit. After my last baby, I kept telling myself that things would get better as he got older and it wouldn't be so hard. But it just got worse to the point of unbearable. You need to at least see your OB and talk about your feelings and she what he or she suggests. You also owe that to your baby and your husband as well.

I know that this may be a long shot because I know how hard it is to get out of the house when you have a little baby. But maybe you and Matt could join a support group for new parents or one for parents of children with special needs. I think it would do you wonders to get out & hear what others are also feeling/going through. It would also give you a chance to talk freely as well.

LB said...

My heart goes out to you and I am praying for you and Matt and Jonah. I can't imagine the stress, hurt, heartache involved in all you're going through. I'm praying for peace, comfort, healing, strength, trust. Thanks for being so real about the situation you're in...

ann said...

Open their eyes Lord, and let them see Jesus. Let them reach out and touch Him, and know that He loves them.

He's not even surprised at how you feel, and His feelings aren't hurt. He knows you better than you know yourself - both of you. He's big enough and strong enough for your questions, and He doesn't back off. He's sending you help and solace today. I pray that you see His hands, His feet, His eyes, His ears and feel His touch in those He sends.

Alicia said...

Patrice, I never comment, but read your blog daily. I know how it feels to be on the "outs" with G-d. My son lost his left leg the end of November and is living with us now. There were horrifying injuries all over his body and he was in the hospital for two months. He almost did not make it out alive. He is 22. G-d and I are not on speaking terms anymore. I really do not think we ever will be again. But for people like you that are suffering, in pain and your relationship with him not being "right" at this time, I feel so badly for. All I can say is keep praying. And remember, you are doing the very best that you can at any given point and at any time. Be gentle with yourself, and with Matt. And I will think very positive thoughts for you. You are cared for by so many people that you will never know.

Alicia

velvet brick said...

Hi Patrice,
I read your blog regularly and I am praying for you and Matt and Johnah. Yes, God is good, and wonderful and all that stuff...and trust me...I go to church, I set up the communion elements, blah, blah, blah. But...I really don't think the focus should be on God right now... In my heart, I believe that you and Matt would truly benefit from support from outside...a support group for parents whose children suffer from an acute illness. I know EB is relatively rare, but is there a support group around for parents of children with EB? A very close friend of mine has IBC (inflammatory breast cancer)- which is rare. She found support, get ready... online! She joined a group of women who have the same disease and they help each other as they work their way through treatment, doctor visits, procedures, etc. Maybe there is such a thing for parents of children with EB (you could 'google' it and see). Also, please do not close the door on outside counseling or therapy. Yes, you are pissed, and mad, and exhausted, and angry and 'distrustful' and spent and all those things... you SHOULD be! I would be, too - and more!! You and Matt are under tremendous pressure and the human body and spirit can only do so much, take so much before it cries out for help. Please ask your doctor about a referral for a counselor to help you. To help Matt. To help you both. I've done it myself and it wasn't nearly as 'bad' as I thought it would be. It gave me a support perspective that I needed to help me cross a bridge, so to speak. There is no shame in asking for help.

I will continue to pray for you. I will ask God to cover you with help and healing. Sorry, but you ARE a wonderful woman, despite all of your human flaws that you (and the rest of us!) have. May peace find you today. With love,
Carol
aka Velvet Brick

Anonymous said...

my marriage suffered when my first was born and it wasnt easy to build it back up. and my baby didnt have any health conditions, he was just very very difficult and cried non stop. so please know that it is normal for a marriage to suffer. and it will get better.

i cant imagine what you are going through but i do know that its okay to be angry at god. its a relationship. and going through hard times is okay.

Robin said...

Patrice,
You touched on it, but I don't know if we give credence to it as christians. This is the devil's stomping ground and you've been messing with his world. How many have you inspired and turned toward God through your faith? He doesn't like it and he wants it to stop. How does he do that? He gives you the distraction of hard times and the more you pray the less results you see. So, it must be God who's not listening, right? I have watched this happen time and time again to those that boldly claim their faith in God. I think it's why many of us only dabble in our faith because we don't want to draw the attention of the evil one; but our God is bigger than that. It's at this point where you have to give up any control you are trying to hold on to and give it totally to the Father. This side of reality is the ugly part; the part that really makes us long for the time when we'll be with Jesus. Hold on dear, sweet Patrice, and know that even Jesus asked if there was another way to do this.
I am still praying to our God for all of you.
You are loved.
Robin in TX

Anonymous said...

Sweet Patrice,

This is why we are the body of Christ. None of us has to suffer alone or be strong alone. You do what you need to do right now and know that we will be praying for you and praising God while you can't. God is big enough and strong enough to take your anger and love you still. He's not going anywhere. Know that you'll be surrounded by prayers for you and for Matt and always for Jonah.

Jodi said...

Continuing to pray for you, Matt, and Jonah.

"Trust in the Lord with all your heart, and lean not on your own understandings. In all your ways, acknowledge Him, and He will set your paths straight."

Anonymous said...

When my 15 month old is mad at me or upset for whatever reason and he isn't trusting my judgement I still come around him, I still embrace him, I love him all the same, I still know what is best for him, I still look into his eyes and I am still glad he is my son. I think God has the same feelings towards you. Your heart may not be burning to talk with him or trust him, but he will still meet you and embrace you, calling you his daughter. Nothing will change that. Yes, we were sinners. Yes, we have evil in us and often we make dumb decisions that are not in line with God, but the glorious thing is that Jesus has made us a new creation. We are daughters and sons of God. We are holy. We are priests. We are partners with the Lord. We have been freed from sin. We are His friends. He protects us from evil. Nothing can separate us from his love. I will be praying for you and Matt that the truths of scripture will become real to you again. I will pray for protection from Satan. I will pray that you will be able to rest in him again just as Jonah rests in your arms and knows he is loved when you are holding him.

mindy said...

Dear God, please lift Patrice and Matt up in this difficult time. You know what they need right now. Please comfort them and sustain them in all that they need.


I know all of the things that oyu dont want to hear, Patrice. You dont want pats on the back. You dont want a dang hug right now. you want to be angry. Go ahead. BE ANGRY. God will be there when you are finished with it.

He loves us, even when we rail against him...when we bang our fists against His chest.

be angry. pay very close attention to each moment you allow yourself to be angry...one day, it will go away and pay very close attention to the positive feelings too. Pay attention to your emotions...you are allowed to feel them all.

be strong Patrice. We are holding you up in prayer today

Anonymous said...

Patrice,
You are part of a world wide Christian community that is praying for you and holding you up before the Lord. Guess What! You don't need to pray or think holy thoughts at this time. That is what the community is for. When you have walked through this valley, and you will, then it will be your turn to hold the rest of us up should we need it. I had a huge valley to get through in my life. It took at least two years to get through the worst. I was prayed through it, because I sure couldn't pray at the time. Relax. You have extra prayers coming from Sophie in Pakistan.

erika said...

Praying for your family today
Erika from IL

April said...

I don't have the answers but I am praying. April

Heather said...

Patrice,
The only way you will get through this is to be honest with God about how you feel. When I lost my first baby, I was so mad at God, and it took some time to work through it.

Psalm 119:25 says, "I'm feeling terrible—I couldn't feel worse! Get me on my feet again." Even David, the man after God's heart, struggled with these feelings. And somewhere in verses 7-13 in Revelation 3, it says, "I know that you have little strength..." God knows that we're only but human, and it meant so much to me to read that He knows that I'm not that strong and am falling apart sometimes. He knows, and He understands. I will definitely pray for you and Matt. It cannot be easy to deal with what you guys are dealing with daily. I pray for peaceful rest and renewal for you guys.
I wish I could do more.
Heather
Charleston, SC

Nadine said...

Hello Patrice and Matt,

I think I have only commented once before...and as I hear a glimpse of your heart...ok...I know you said for us not to leave some specific words...but I can't help but see you as courageous...You have been vulnerable enough to speak and say some hard truths of how you feel...I am not so sure I have done that enough for others to see... lots of people are praying for you and will continue to pray for you in the gap...and we are one of those families out here in Canada who pray many prayers for your sweet family.

Just know that you are prayed for...

Alex(andra) said...

I don't know if I can't say anything that hasn't been said already, so I'll just say that I'm praying, so much, for you and Matt.

Lyndsay said...

The song that you reference at the end of this post is playing on the radio as I type!

Dear God...I pray that you will take away Matt & Patrice's pain, shame and sorrow. God carry them through this time. Help them lean on you even more and cleave to the strength you do give them.

In Jesus' name Amen!

jennifer said...

prayers that you and matt are able to take the weight of your hurt, anger and grief and use it to lean into Him. sometimes that's all the energy or audacity a soul can muster. just lean. leaning will eventually break way to prayer again when you are ready.

life is messy. free will would lose its punch if life were blessed, simple or easily resolved. it just is.

much love and continued prayer. it is impossible to pray for jonah without praying for his family.

Julie said...

Dear Patrice, thanks for your honesty. So, you are a sinner? Me too. You got mad at God? Me too, but I don't have half your excuse. You find it difficult to pray to the One who can help you with all this - right there with you, sister. You hardly ever read scritpure these days - yep, got that one too. You are so tired you don't know what you feel? Been there. Lost one child and have another who is suffering, and will suffer, so much? No, I don't know that pain. I can't begin to know what you suffer. I can't begin to understand. Does that mean I can't help? No! You see, although we live thousands of miles apart, in different continents, God has brought our lives together. Why? So I can pray for you - and I do, and I will, every day. That's a promise. Not just me, but my kids too - and that means every day ( and I mean EVERY day) we will pray. And we won't forget. And we won't stop. No matter what.

Enough said.

Julie x

Anonymous said...

Patrice, I'm keeping you and yours in my prayers constantly. I'm glad you're able to open up here and share what's going on. Big hugs coming to you from Missouri!

Joyce said...

HI Patrice
I have never commented before but have followed your story since jsut before Jonah was born.

When i read this post, it brought me back a year when I as in the depths of grief over a dear child who I really loved. (He wasnt my child but I was very involved in his life). YOu are descibing some of the stuff I struggled with - the biggest one was not being able read and pray. It was the lowest of lowest and I eventually sought councelling. Grief is a horrible journey to walk and I never knew until i walked it, how hard it really can be. Im not trying to make you feel worse by saying that. But what I do want to encourage you in that it will end, or maybe not end in the sense you will never feel that loss agian, but you will smile again, you will be able to pray from the heart, you will read God's WOrd and really want to read and understand and delve in it. I wish someone had said that to me when I was really bad, instead I shut the door and tried to hope it will get better.

You have been dealt a hard hand, not only did you loose you first little man, but you are facing another hard journey, albeit a different one. Your grief is really twofold and that is tough.
(Sorry i sound like a bit of a know it all but i cant go back and re write as my dear son is bugging me too much). I hope you will understand what i am trying to say and I think its so great that you tell us all, so we can pray and beseech God on your behalf , while you are struggling in this area.

Joyce

Natalie Whisler said...

Dear Lord...

Please allow Patrice to see herself with the eyes that you see her with... ones full of love and grace.

Hilary said...

Praying, praying, praying for you and your sweet family.

Anonymous said...

Praying for you and your situation...please inform your physician and let him/her know what is going on! You may need antidepressant/antianxiety meds...we all would with all that you are going through. Don't know what else to say but that. Kate in MO

Speirs Family said...

Patrice,

The passage of scripture in John 11 always brings me understanding. When Jesus allowed Lazarus to die the scripture says, "Now Jesus LOVED Martha and her sister and Lazarus. So, when he heard that Lazarus was ill, he stayed two days longer in the place where he was." So, it says he loved them and therefore he let him die. Sometimes, as you know, God does things that our minds can't make sense of, but he does it because he LOVES us. John Piper said, "Love is when God gets you to God." He is doing all this because he is calling you to himself and is wanting you to get to GOD!!! He LOVES you so much and he is has allowed all this because he loves you. The bible also says, "God does not willingly afflict his children." Patrice, I will be praying for you and Matt and just keep believing that he LOVES you SOOO MUCh because the enemy wants you to believe otherwise.

Kelly Speirs

Ray said...

I can't relate to what you are going through. But I know this--it takes a certain kind of person to make it this far. I know you can make it.

Beth said...

This song (link below) has often brought me comfort, my prayer is that it will do the same for you. Thinking of you here in Ohio.
http://tinyurl.com/q4agvh

The Burgess Family said...

Praying for you guys...

Patrice, this is directed at you as you said you cannot speak for Matt. What your going through is TOTALLY normal! I think any parent with a child who has needs feels this way at some point. I remember thinking when Hope was diagnosed with DS that I wasn't going to be able to handle it. My prayers went from "thank you for this life growing in me" to "Please God, don't let me slap someone sill for calling her retarded" (and I STILL cannot stand the word retard). You will go through days where your smiles and laughs are real and other days you will be so angry it is all you can do to go through the motions. Hope died almost 3 years ago and it has only been in the last 9-10 months that I have started going to church again. God will still be there when your ready to talk to him. Make sure you work through ALL of the emotions you have with Gabe and Jonah... God is patient and he can take it all. Yell at Him, no one says you have to be nice to Him all the time and honestly, yelling at God gets out some frustrations!!! I am not sure if you have ever read this but, it might help. Welcome to Holland.

"I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.' 'Holland?' you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.' But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that’s where I was supposed to go. That’s what I had planned.'

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."


We may or may not experience Italy down the road. Only God knows whether our journey will take us there. But for now, our Holland is bright. We would have never known the beauties of this country without God's plan. Holland truly is beautiful this time of year...

Anonymous said...

Praying for you, Matt, and Jonah.

Lisa said...

I've never commented before, but I want you to know that I do understand where you're coming from. I've been there. I know what it's like to be so pissed that you don't want to talk to anyone, but I usually just wound up calling my Mom. My husband could never understand why I went to her when I couldn't go to him, but she helped. I'm hoping you have a friend who can do the same thing for you. You will get through it, one way or another, you always will. And the one thing that it took me forever to figure out is: You ARE a good person. Sins, feelings, upsettedness (is that a word?) at God, and everything. My teacher always used to tell us a quote that stuck with me. "You are a precious, worthwhile, mistake-making person." And it's true, you are! Everyone loves you anyway.

Mandy said...

You are totally right about the war going on around us constantly. And it is nothing easy to handle. We are called to be warrior princesses and yet some days we just want to be the damsel in distress and have someone else do all the fighting for us. I've just finished reading a couple great books. The first is Captivating (which I would highly recommend anything by the Eldridges), and second is Shame Off You by Alan Wright. He is our pastor here in town and has written several books. I feel this one has spoken most deeply to me lately and I would love to bring you a copy if you like. It is about helping us to shed the shame that has been caked on our whole lives from so many sources, including ourselves. The beauty of it all comes down to God's grace and how there is no condemnation in Him. You are loved and you are allowed to feel down and lost on occasion. You are not, however, losing.

Queen Mumma said...

I am not going to talk about God. What I will say, is that I understand the lows. I have so many of them in my life. One huge one that leaves me not wanting to get up out of bed. So, take comfort in knowing that you are not alone in the lows.

Anonymous said...

Hey Patrice,
I liked your blog post today. You are real and asking for help. I will pray for you and your family. You will get through this, I pray for strength, unity, love and forgiveness to fill your household.
We live in a sinful world. I do not believe God is out to get you or that he wants you and your family to hurt. This world is full of joy and suffering and yes we need to keep our eyes on God and remember he is on our side. It is a tremendous time of stretching for you and Matt.
I myself, have had the worst case of postpartum depression to date now after my 4th child who will be 5 mos shortly.
Know that you and Matt are not alone.
Much love- I don't have words for you, but know I am praying and I will step in the gap for you and have faith, when yours is waivering.
God loves you so much.
Carlee

Jane said...

Hi Patrice, you and Matt have been in my prayers every since you lost Gabe. Your feelings are natural and I can understand, but please get in touch with your doctor about getting on an anti-depressant. When our youngest daughter was born, she was diagnosed with CP, she was misdiagnosed, I took something to get me though this. She went through short heel surgery and a couple of eye surgeries when she was young, she is doing fine and a mother of twin girls now. I had to get some help during this time. When my mother was dying from cancer, I also had to take something then. Believe me it will make a difference. Please don't be too proud to reach out. Your situation is very different from what I went through, you have had a lot to deal with in the last months. May God Bless you, He is always with you regardless of how you feel. God, I ask that you wrap your arms around Matt and Patrice and give them the strength, wisdon and courage to endure all that is going on in their lives, in His precious name. Amen

Michelle said...

Patrice
Hello from Picton, Ontario, Canada!

I soooooooooooooo appreciated your openness and complete honesty with your blog post. Thank you for sharing in words what many of us feel but are too afraid to tell others!

Do I know what you're going through? No. I do not have sick children. I have three healthy boys and experienced two miscarriages years ago; but I don't know what it's like to care for a sick little child.

Maybe it will help you to know that you WILL have days like this. There'll likely be more. But how wonderful is this whole blog world! You have not only the support of your family and your home church, but also the support of hundreds or thousands around the whole world...people who do not even know you! I see you've even got a follower from Australia! Wow!

I have no preachy words for you, no Scripture references, no "words of wisdom". I just want you to know that I appreciated your post displaying your hardship and your feelings and your anger. I feel the same as you somedays and then feel selfish because I'm not going through anything NEAR as strenuous as you and your husband.

DON'T remove the comments from your posts. They'll help you. Looks like you have a circle of caring friends and family. And just know that NO ONE judges you for how you feel. I can see you're an amazing young couple. I appreciate reading blogs like yours, where people going through a difficult time are able to praise God and also are not afraid to say "I'm angry; I'm tired; I'm frustrated.... yet I will Press On." (Go listen to Selah sing Press On!)

Hang in there, sweetie. And don't stop blogging. The writing will help!

Again, thank you for your honesty. I look forward to reading more posts and watch with anticipation to see what God is going to do in your lives.

Michelle Found
Picton, Ontario, Canada

VA mom of 4 said...

I am 49, Mom of 5 kids- I've been around the block a few...

As your sister in Christ I say to you, my life verse. Phil 4:13
Patrice can do all things through Christ who gives her strength.

I was widowed when my last 2 kids were 5 and 3, and have been a single parent for 7 years. Many many times I have dropped to my knees and said, LORD, please help me, this is more than I can do. HE HAS NEVER FAILED ME. I stand on that verse, I say it every day. Get your Bible out and read it- you need that power, that truth in your life. I'm serious- you cannot do this without the strength of God. This battle is in your mind, the things you are saying to yourself...
2 cor 10
3For though we live in the world, we do not wage war as the world does. 4The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.

Take captive the thoughts that say I can't- and say the truth- I can!

I'm praying for you dear girl.

Amy Lynn said...

Praying for you, Matt and Jonah.

Ebe said...

Patrice, I think anyone who is in your shoes, walking the road God has placed before you, would be crazy if they didn't struggle with feeling the way you feel right now. This sucks! It sucks that Jonah has to struggle so much as such a little baby. It sucks that little Gabe is not here with you right now. It sucks to be separated from our little children.

God is big enough and is willing to take on all your feelings of anger, frustration, unfairness and sorrow.

When we don't know how to pray, the Spirit intercedes for us with groans that words cannot describe.

I think this post was God glorifying!
You are broken- who wouldn't be after everything that has happened? You are confused and feeling despair- can anyone blame you?

But the Spirit within you desires to be near to God and to radiate with the light He has put within you!

I just want to encourage you with prayer and with the knowledge that God will never abandon you because you struggle.
It is in our needs and weaknesses that we see God's power and glory.

I am praying for you and Matt and little Jonah, too.

love and prayers,
ebe

Anonymous said...

Prayers, Patience, Peace!

Kris said...

My family prays for your family daily, but today I will be praying for you and Matt, specifically. Just know that you have made me examine some of the dark, cobweb-filled corners of my own faith today. Those corners aren't pretty, but they need to be examined and dealt with.

God knows us better than we know ourselves. We're not hiding anything from Him -- anger, fear, doubt. He sees it all and yet He still loves us.

Praying for you.

Anonymous said...

I had a friend tell me once that you will know that He is all you need when He is all that you have. Just remember that the battle is already won. Our Lord is taking care of you and your beautiful boy as I myself try to remember He loves our children much more than we do. If everyone was honest with themselves then we would all say at one point or another that we have been upset with God. Just know that He is oh so bigger than that and He can take it. When you can't pray then just look up~ Because He lives so can we, mad or not. He still loves us and cares for us ya know the whole grace thing :) and girl we are all in the family of God and are praying for you~

Katie said...

Praying for you, Matt, and Jonah here in North Carolina!

Deb said...

Dear Sweet Patrice, your all in my prayers, I have contacted my prayer group leader, we have you covered along with half the world right now, take a break today.
The comment @ going to Holland & not Italy is the most wonderful thing I have ever read, thank you Burgess family for sharing that analogy with the rest of us. We can all learn from this blog daily, thanks for bringing that to us Patrice, we Love you and your precious family.

Anonymous said...

I have been drawn to your story since one of my friends on facebook because part of Jonah's group> I have prayed for your family and jonah ever since. Your faith in God is so apparent in all of your postings, and he knows your true heart. You are a true warrior and what an unbelievable mom. Jonah is so beautiful, and I pray for his healings. I won't pray for him to just have the blisters, or anything else. I will pray for a complete healing because God is the miracle maker. He will never give you more than you can handle, and he won't give Jonah more than he can handle either. Another thing I will add in my prayers is although doctor's are human, I pray you have one that is filled with the Holy Spirit and God will constantly guide his heart and hand!

Anonymous said...

Feeling your pain.
Very frustrated in my own life.
Praying for you.

Anonymous said...

weeping comes for the night, but joy comes in the morning. Life is not fair, it stinks, and all of us at one time or another hate it and it is impossible to trust God and pray and read His word. That's why God gaves us fellow believers to go thru the problems of life together. To uphold one another in prayer and approach the throne boldly for those who need to be carried there. I am carrying you and your family there so you do not need to. God will intervene in His perfect time and not until. God's best blessings on you as you wait on Him. Deb

CarrieS said...

Patrice,
I began reading your blog a few months ago, and normally don't comment, but felt God tugging at me. You glorify God in your highs and lows, and you give others hope through your battles. I often find comfort in the lyrics of music, and when I heard this song a few moments ago, I thought of you and Matt. Your family is in my thoughts and prayers.
~Carrie

Third Day - Cry Out To Jesus

To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough when you said goodbye

And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

For the marriage that's struggling just to hang on
They've lost all of their faith in love
They've done all they can to make it right again
Still it's not enough

For the ones who can't break the addictions and chains
You try to give up but you come back again
Just remember that you're not alone in your shame
And your suffering

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

When your lonely
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

Just'N Angel said...

Praying and feeling your pain through your words. Don't give up. "Hold on my child. Joy comes in the morning. Weeping only lasts for the night." Psalm 30:5 But while the weeping is going on, it's h*ll.

Tina said...

Patrice & Matt,

I haven't any experience with EB, but I do have experience in grief and feeling mad towards God. A couple of years ago, my husband and I decided to try to concieve, and we were successful first try. Unfortunately 6 weeks later I miscarried. So then I thought to myself, "ok, it happens, we'll try again." And we did, an once again at 8 weeks I had a miscarriage. We went on to concieve once again, and at 12 weeks I began to hemorrahage and had to have an emergency D&C. Following my hospital release, my grandfather died. I was hurt, mad at God. I couldn't understand why, when I wanted something so bad that I couldn't have it. Especially when drug addicts are out here having babies, and here I am with a loving heart and home waiting to welcome a miracle into my life.

But later I realized it was just the fact that God wasn't working on my terms and what "I" wanted. I had honestly thrown my hands up and told God that I give up, and that I wasn't trying anymore. Then I found out He had other plans, in October (actually on Halloween) I found out I was pregnant - and am now almost 33 wks.

Never give up hope, never give up on God, because he does work in mysterious ways. And one day when you least expect it, you will find the silver lining to that cloud that you now have looming over your head. May God bless you and your family -- may he take care of that precious little boy you have, and hold you and Matt up and keep you strong. I think about your family and read your blog everyday. Everyone in my family ask me all the time how little Jonah is doing, and they don't even know him. You have touched so many people with your story, thank you for sharing with us. We love you! <3
Tina
(Wilkesboro, NC)

Kelli said...

Praying, praying, praying in South Carolina.

Anonymous said...

Isaiah 40 (start at vs. 10 and read through the end of the chapter) is a passage God showed me on a day that I needed His strength.
Dear God... please be with this family... only YOU know what they are going through and only YOU can give them the strength they need for each day. You know our hearts and you love us anyway... WOW. Thank you for hearing and answering our prayers, even when the answer is not what we wanted or expected. You are our Father and you know what is best... even when we pout and are angry in our little corner. :-) Fill Patrice and Matt and Jonah with the strength that only their creator and the creator of the universe can give...

Meredith said...

I just wanted to say that I'm praying for you, for Jonah and for your marriage.

Anonymous said...

I have read your blog for awhile now, but haven't commented. My son has serious issues as well and was born in January, just a few weeks before Jonah. I can relate to just about everything you said about your feelings as a mom. Praying that he would be able to do little things like any other child. For my son we are praying he can see, talk, sit up, etc. I try not to feel bitter when I see other moms with "normal" kids or when someone tells me it could be worse. But the truth is, if your child isn't "normal" it hurts. It's hard. It sucks. I ask God why his stroke had to be so bad. Why we have to shoulder this burden. The only thing that gets us through the hard times and the bad doctors appointments is knowing, and trusting that God is in control. I find myself turning blankly to the bible and somehow God always speaks to me through His word. He has not forgotten us, and somehow through all of this he is refining us. It hurts, but I think in the end it will be worth it-no I know it will be. Know you are not alone and you and your family is in our families prayers. This battle is hard, but glory to our great God who ultimately wins and does not give us anything he will not walk us through. love & hugs in Christ. Dee

Rachel said...

Hey there Patrice...I have been reading your blog for a while now; not sure if I have ever commented but I felt the need to say something after reading that.

I just wanted you to know that I (along with so many others!!!) am praying for you. I won't pretend to have any idea of what you are going through....it is definitely far worse than anything I have experienced and I am so sorry.

I'll keep praying, and I know I speak for so many others....know that on the days you don't feel like praying there are others who are praying FOR you :).

Whether you like it or not ;), even when you don't feel like it...you ARE an inspiration.

Keep fighting for your beautiful boy, for your marriage, and for yourself.

With love,
Rachel

Laura said...

Thank you for your honesty with this post.

Anonymous said...

I am very relieved to hear how "real" you are. I am praying for your marriage to stay firm; bendable but not breakable. I am praying for your heart and for Jonah's healing.

courtney said...

I'll try not to use "inspiration", "strong", or "example", but I will say thanks for your honesty. You never know how being honest with your struggles can help others.

Anonymous said...

Get Inspired: Articles to help you find your purpose
When Satan Hurt's Christ's People



When Satan Hurts Christ's People
Reflections on Why Christians Suffer Losses
by: John Piper



--------------------------------------------------------------------------------






Revelation 2:10



When huge pain comes into your life-like divorce, or the loss of a precious family member, or the dream of wholeness shattered-it is good to have a few things settled with God ahead of time. The reason for this is not because it makes grieving easy, but because it gives focus and boundaries for the pain.



Being confident in God does not make the pain less deep, but less broad. If some things are settled with God, there are boundaries around the field of pain. In fact, by being focused and bounded, the pain of loss may go deeper-as a river with banks runs deeper than a flood plain. But with God in his firm and proper place, the pain need not spread out into the endless spaces of ultimate meaning. This is a great blessing, though at the time it may simply feel no more tender than a brick wall. But what a precious wall it is!



As a father, I want to help our twelve-year-old daughter Talitha settle some things with God now, so that when little or big losses come-and they will come-her pain will be bounded and will not carry her out, like a riptide, into the terrifying darkness of doubt about God. So as we read God's word together twice a day, I point out the mysterious ways of God.



Two days ago, we read this from the lips of Jesus to the church at Smyrna in Revelation 2:10:



Do not fear what you are about to suffer. Behold, the devil is about to throw some of you into prison, that you may be tested, and for ten days you will have tribulation. Be faithful unto death, and I will give you the crown of life.



I asked Talitha, "Is Jesus stronger than the devil?" "Yes," she said. Indeed, I added, ten million times stronger. It's not even close. In fact, as Mark 1:27 says, "He commands even the unclean spirits, and they obey him." So all Jesus has to do is say to the devil, "You shall not throw my loved ones into prison," and the devil will not be able to do it. Right, Talitha? Right.



So, Talitha, why does Jesus let the devil do this? Why does he let the devil throw his precious followers in jail and even kill some of them? She shook her head. I said, well, let's read it again slowly, and you tell me the reason that the Bible gives. Slowly, "Behold the devil is about to throw some of you into prison . . . that . . . you . . . may . . . be . . . tested." So why does Jesus let this happen, Talitha? "That they may be tested." That's right.



And what is being tested? The answer is given in the way Jesus describes what passing the test looks like. He says, "Be faithful unto death, and I will give you the crown of life." Faithfulness to Jesus is being tested. Will his loved ones keep trusting him? Will they keep believing that he has their best interest at heart? That he is wise? That he is good? That he is stronger than all?



So, Talitha, there are a thousand things that God is doing every time something painful happens to you. Most of these you do not know or understand. Job, Joseph, and Esther did not know what God was doing in their losses. But there is always one thing you can know God is doing when pain comes into your life. This is something you can settle with God ahead of time. He is always testing you.



If the test leads to your death, as it did for some of the Christians in Smyrna, Jesus wants you to know something ahead of time. "You will receive the crown of life." That means he will raise you from the dead and will crown you with the kind of everlasting joy in his presence that will make up for your loses ten-thousand-fold. "Crown" signifies majestic, royal restoration and exaltation.



James says the same thing:



Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.



Passing the test means loving God to the end.



So settle it, Talitha. Loss and pain are coming into your life, but Jesus is infinitely stronger than the devil. So even if the devil is causing it, as he did in Smyrna, Jesus is letting it happen. And he always has his reasons-more than we can know. One of those reasons is always testing, namely, the testing of our faith and our love for him.



We cannot answer every why question. But there is always this answer: My faith is being tested. And our Lord never wastes his tests. Whether we believe this truth is, in fact, part of the test. In the mind of Jesus, the promise that he would give them the crown of life was enough to sustain the Christians in Smyrna. I pray that it will be enough for Talitha-and for you.



Trusting the wisdom and goodness of Jesus in loss,



Pastor John



© Desiring God



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Cindi said...

It is perfectly normal and to be expected that you feel the way you do! I don't know of anybody who wouldn't feel that way. I am thinking of you, praying for you and sending you huge hugs! <3 Hang in there!

Kathryn @ Expectant Hearts said...

Patrice, I know all our journeys are as different as we are. STill, I want to share a few things with you. When our son was in the hospital, dying at 6 months of age from a congenital heart defect, I said to a woman who I consider to be a "spiritual mom"; "What does it say about my faith that I"m so angry at God?" (Cause I certainly didnt want to talk to Him either.. and was STRUGGLING to believe in Him for much) and she said "It means you know He's big enough to handle it". IT's okay to be angry.

Beyond that, as you KNOW, it is HARD to be in the midst of battle.. One of the best things I do for myself (and it's not easy) is to remember the "belt of truth".. And rarely are my FEELINGS (especially those spurned on by fatigue and worry) TRUE. They are JUST my feelings.

Praying for all of you.

Jenny said...

Hi Patrice,
At my church we often talk about faith journeys as people grow closer to God. I usually picture people walking in the woods -- sometimes the path may turn or twist, but usually, its flat and easy to navigate. I feel like in the middle of your faith journey, you have come across a huge mountain (one that most of us will never have to cross) and now it's your job to climb that mountain. But, you (as all of us would be) are not prepared for such a difficult task. It's not your fault -- you didn't know that it was coming. I feel like you're being so hard on yourself because you expect to be as strong in your faith as you were before you got to the mountain. Patrice, I know that you want to climb that mountain and continue on your faith journey, and so does God. I will continue to pray for you and your family.

Kellie said...

I read your blog every single day from tampa Florida and while i totally do not know what you are dealing with You wont hear me telling you how to act. everyone has the right to their emotions. everyone has the right to how they feel. and this is your blog and you can voice your opinion. I am glad that you did not disable your comment section on this blog but would not have blamed you if you had. NOT even a Christian is Pure and unscathed. Everyone sins. Everyone has Feelings and for someone to say they dont is a lie. NO one is perfect not even a Christian. I am thinking about you. I wont say praying because i just dont pray much anymore. Everyone has their own way to deal and maybe like me writing is your way out.

GOOD LUCK.

Anonymous said...

My Sweet Patrice, After, I left a meesage on Matt's cell this morning, I had a feeling, after no reply, that this day may be one of those rainy sad days
I so understand how hard it is to keep hearing how strong you are, how brave,or what a great inspiration to others. you just wont to be Matt's wife and Gabe and Jonah's mom. people mean well when they make these comments. I have learned over the past 2 years dealing with my own health Issues, that God does and will use us in our times of suffering , for his good. Do I understand all that? NO !!!
Please donot be so hard on yourself, are you in any way being held accountable for any past sins or wrong doing? , I need not even answer that, because you know the answer.
The God we serve is full of Grace, mercy and forgivness


I am right there with you, I am mad,sad, angry and my heart is just broken, my tears are many.
You guys have my heart!

Parying for a healing of Jonah's body
Praying for comfort and peace for you and matt
Praying of understanding for us all

Love Gina

Beatrice said...

Praying for you and your family.

I can't even begin to imagine what you're going through, seeing your precious, beautiful baby boy in so much pain. And I can understand why you're angry. It does seem very unfair. I have no words to try and make you feel better, but I will be praying for you and Matt - and beautiful Jonah, of course

Jessica mommy to Alex/ RTS said...

I have felt this way too.

Astrid said...

Patrice, the only good that is in any of us is Jesus. You have been given a very difficult road to travel. God knows you are angry, and that is o.k. Be mad at Him all you need to-He is still right there with you. I'm praying for you guys that God would draw you real close very soon and enable you to cling to Him and to each other.

Leah W said...

Oh dear Lord,

Please God, let this family know that they are not the only ones that feel like this at times. That they are not the only ones that get mad at you. Please Lord, fill them up with joy that is unchangeable. Let them know you love then, no matter what.

Lord, be with Jonah. Do something amazing. Do something that will bring glory to your name.

Amen

Christian Kay said...

I am not going to say what you want to hear because I am agnostic. Unfortunately, I no longer believe in a loving, all powerful God because of situations exactly like the one you are in. It isn't fair and it is so hard to believe that if there truly is a loving God, why in the world would he let horrible things like EB happen to innocent beings like baby Jonah? I truly understand. I was born and raised in a very religious family and so many awful tragedies have happened to me, those around me and worldwide, that I just don't believe anymore. I am not trying to tell you not to believe, I am just telling you that I have been there and I have gone through the doubts and I understand just how much you want to scream and stop believing. I hope that for your sake, since you hold so much comfort in your relationship with God, that you get through this and to the other side. But just know there is someone who understands your anger, has been there and is angry for you and with you.

Rebecca said...

Praying, praying, praying.

Nan said...

I look to my friends and family for support and comfort now-a-days, they are the only ones that answer my cries! My faith is still there, but hanging by a thread, so with one of the last threads I pray you continue to find strength with your hubby to get by. I am sorry you are going through this. Hugs.

Nan - Mommy to angels ^Shelby^, ^Megan^ and ^Aimee^

Precious 3 said...

I am not going to praise you, I am not going to tell you I think you are horrible for your feelings. God understands. And if you can't talk to Him right now, just know that there are many, many people talking to Him today for you. I agree with Heather from Ontario, Satan is powerful, but God is MORE powerful. When you feel like your armor is thin, and you can't carry your sword, imagine God standing between you and Satan, doing the battle you are too weak for. When you feel like you are in the middle of a storm, and too weak to walk through it, let God carry you. I am praying for peace for you and Matt. Praying for you and Jonah everyday.

Laura said...

Jesus,
I pray that Your strength and Your love overwhelms the Williams family each day, each hour and each minute. I praise You that You are the same today as You were when it was easy to soak up Your word. I know that no earthly words can bring comfort right now, and so I pray that You shower this precious family with Your peace. Even if it is hard to see now, I pray that when Patrice looks back on this time, she will see how present You are every second and will be able to see the great things that You are accomplishing that are impossible to see right now in the midst of struggle. God, my heart knows true pain, and it breaks my heart that Patrice is hurting. I know that You are bigger and You hold her, Matt, Gabe and Jonah all in your mighty hand...You know every hair on each of their heads, their every thought and You catch every tear they shed. Surround them with Your overwhelming, calming peace. In Your precious name, Amen.
With great love & hope,
Laura
A faithful prayer warrior for your family & a Young Life leader in Alamance County

Amber Schmidt said...

These are things that go through a mother's mind.... as a parent of a special child who has watched that child be legally DEAD three times now... it sucks. Our daughter is almost three and has been living with a debilitating set of conditions classified as VACTERL'S Association. She has had 15 surgeries, 2 open hearts and we have spent more than a year's worth of days in the hospital. I say this not to make you feel bad or good or even indifferent. Just know that there are others out there who are hurting WITH YOU.... FOR YOU... and are lifting you up in prayer.

As a mom who has watched her daughter spend 1/3 of her life in a hospital bed I know a few things about grief and pain and anger. There are days when you feel like **** and you want to quit (just like the song says). There are days when you will be angry and sad and moreover hurt and feel betrayed. Like the ONE person who could take it all away, won't and allows your baby to suffer and you wish like He!! that you could be in their place...

Those days are a LOT in the beginning, or they were for me. They are fewer and further between now. As a mother you will continue on, through your pain and hurt. You will continue on not because you are strong or faithful or any of those things Christians should be ... you will continue on because you have no other choice. This is the life you were given and as Emily Pearl Kingsley said "you have landed in Holland and here you must stay."

I know what a toll the stress of s special child can take on your marriage and I beg you... hold tight to Matt... so tight that your emotional fingers turn blue... I did not recognize it and things slipped into our lives and nearly tore us apart. It was a slow fade and two long years of this wore us down.

I wish I could write a "do's and dont's" list for people to say to new parents of a special child. As much as you "know" these thing hearing its "God's will" or "Stand Firm" ... those things just upset me more. I cannot promise you this road will be easy... but I can promise you... you will make. You will LIVE through this... you will keep going and eventually you will make it through.

I know this is an insanely long post but just know... there are people who understand... and I wanted you to know that we are here for you and Matt!

Please feel free to email me ANY Time you need to chat, scream, cry, laugh, etc.... hugs to you :)

Chris Chaney said...

Dear Patrice:

Thank you for being so real and honest. I have had the same emotions/feelings before. The one thing that always comes to me in these times (when I clearly am not sitting still to listen to God or even really wanting to hear Him) is that HE is still Great and Bigger than anything before us...even in the dark moments.
I am praying for you my dear sister in Christ -
Chris

Anonymous said...

praying for you.
daisy (alabama)

Anonymous said...

You can turn off the comments, we'll still be praying. Thank you for your honesty. If every new mom, and especially those of a special need child admitted their true feelings, you'd know how normal "ugly" is. You are just more honest and open than the average bear. When you go through something like you've been through (for me it was serious fertility issues), you set up these expectations for yourself that you'll be nothing but grateful for the rest of your life if God gives you a child and lets your child live. But that is unrealistic, you are human and dealing with some heavy stuff. All I can say is you will get through it and it will get better. It is never a bad idea to see a physician to rule out depression. It can be hard to tell if what you're feeling is reasonable response or something that would benefit from professional treatment. And certainly those who merely read your blog don't know that, so you may want to ask your doctor just to be sure.

Tami said...

Patrice~
The good thing about God is that no matter what we do... don't do..feel... don't feel... say or don't say..

He is STILL our God and he is STILL by our side no matter what!

Even in those times when we don't feel like talking to him.

Here is a link to one of my favorite songs at times like this...

http://www.youtube.com/watch?v=9rqsltr5vsE

Footprints In The Sand
by Leona Lewis

Saylorsmom said...

You have every right to feel the way you do. God doesn't mind your anger. He knows your heart and mind and what you need. I think writing your feelings down is a great way to deal with them. I pray for comfort and peace for you all.

Kathryn said...

Hey Trice...I left you a message---then got distracted at the library and decided to check the blog...so I'll just reiterate the most important part of my message: call me if you want. I love you!!!

brightleigh said...

Prayers and hugs coming your way. I will not write much because many people have written what I want to write. The posted lyrics to the song "Cry Out to Jesus" are very appropriate. We love you and are here for you.

Much love and prayer,
Leigh

Anonymous said...

THANK YOU for being so brutally honest. that is exactly what blogs are about--they're not about being happy-go-lucky 24/7 and putting on this fake fassod (dont know how to spell that word!) for the world to see. i commend you for being so honest and letting us read about some of your deepest despairs. i cant imagine how hard the road you're on must be, HOWEVER, arent there any resources you can reach out to? talk to doctors, social workers, etc etc etc about getting help with jonah? like someone trained in taking care of him so you guys could have a break here and there? just a suggestion because i really think this is much too heavy a load for you guys to be carrying by yourselves! :( im praying for you guys and hope that you soon find comfort in the lord..dont forget he will always be there for you even when you're mad at him! xoxo megan from wi

Tracey said...

I don't usually comment on blogs, but it sounds like you could use it. I have not been through near what you have, however I have been married for 10 years and am raising 2 wonderful kids. You have to remember that you are human too, both of you. A healthy baby can add tons of stress on a marriage/life, I can only imagine what a baby with constant needs can add. One thing that my husband and I have concluded with kids and a working life is not only do you and Matt need to take time with your husband and wife realationship, but you both need time not to lose who you are as individuals. It sounds like you have a wonderful support group, take advantage of it girl. Even if it's 2 hours once a week and you drive aimless around your town to clear you head and remember who Patrice is, it will be well worth it. Even when time seems limited and guilt overtakes us to take time by ourselves we must remember before we were wifes, mothers, friends whatever we were ourselves and being ourselves is what has made the rest fall into place. Sometimes when I feel like I am losing myself, I feel like everything else starts caving in too. You both I am sure have a lot on your shoulders, take it one hour at a time, and all else will follow.

Good Luck! Keep your chin up -- the sunny days are ahead.

Still praying for all of you in Virginia!

Anonymous said...

Praying for all of you in Ohio! No great words here - what you're going through must be about as sucky as it gets - but you are reaching up from that deep hole that you're in (it's about all you can do) - and that's what counts. I don't believe in Satan - there are just places where God isn't, where love isn't - and that's not the case with you - never will be.

Danielle @ Living Out Loud said...

I wish I had something profound to offer you... I don't. The only thing I can say is that I feel certain your feelings and thoughts are very normal and would be experienced by any mother in your position. You are just doing what any good mother would try to do... learn to take care of and love your child despite immense sadness. I would feel exactly the same way that you do... only probably worse. You have been through more in the past couple of years than most mother's experience in their lifetime. Give yourself some time... God understands.

momma said...

very simply: i am praying for you, sister ~ with all my heart, without ceasing!

Jill said...

Patrice,

We are in a battle....a life-or-death fight to the finish against the Devil and all his angels. (Message)

What you are going through really really sucks. I am so sorry. I cannot even begin to understand how incredibly difficult this must be. I do understand the roller coaster of the emotional highs and lows that go along with prayerfully trying to understand and somehow move forward. I understand the darkness and despair and hopelessness.

I am sad with you. I'm worried about you. You know that I recently made the really hard decision about antidepressants. It is making a difference.

I love you.

ManyBlessings said...

Having been through some terrible, terrible dark times myself, all I can say is read the book of Job. Sit down and read it front to back.

He gets angry.

He gets pissy.

He is not happy with God.

He wants out and he wants it now.

And still God loves him.

There is nothing like the comfort we find in hearing that someone else has walked the same bitter road as us and survived.

And definitely praying. For you, for your marriage, for your precious baby.

dawn

Anonymous said...

I can't say that I understand what you are going through, but I know what we went through when I miscarried at 14 weeks. It was so much harder than what most understood. All I can say to you is that I am so sorry that you are going through all that you are. I know you love your little boy and I wish that things were all sunshine and roses. I pray that things will get better for you and that you will find the strength that you need to get through each day. It is amazing how you get through each day and I know you will continue to do so. May God bless you, Matt and Jonah with all that you need!

Shawna from Texas said...

I can't say that I understand what you are going through, but I know what we went through when I miscarried at 14 weeks. It was so much harder than what most understood. All I can say to you is that I am so sorry that you are going through all that you are. I know you love your little boy and I wish that things were all sunshine and roses. I pray that things will get better for you and that you will find the strength that you need to get through each day. It is amazing how you get through each day and I know you will continue to do so. May God bless you, Matt and Jonah with all that you need!

amber said...

Hey girl, Praying for you! Pick that sword back up and chug along! Something I have to repeat to myself over and over through this crazy life is--THINK ON THE TRUTH. Remember who God is, what He's done, what He's promised, etc. God is good and uses these fiery trials to refine us and make us more like Him. Anyway, you're in my thoughts and prayers every day! You're not alone!

Anonymous said...

I have never commented before but wanted to share something with you that really impacted me. This was written by someone who is dealing with a tragic family situation. I have paraphrased what he said and hope it means as much to you as it did me.

I believe He love us. I believe He hurts when we hurt. I believe He holds us. I believe that His servants who have been so faithful are not promised safety and are not assured that everything will always go well but I believe we are held. The "good news" is that God came near, not that life will always go our way. I am reminded that He knows how tragic and unfair the circumstances of this world can be. The self-centered choice made in the Garden became the tragic and unfair consequence that was nailed to the tree. Because He loves us.

Amanda said...

Isaiah 40:11
He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.

Praying that today, this week, this month, the rest of your journey through life...you feel God's loving arms gather you up, close to His heart as He gently leads you through this incredible journey..
He hears you, he really does...HE is close to the broken hearted..

Psalm 34:17-18
The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
The LORD is close to the brokenhearted
and saves those who are crushed in spirit

Diana said...

Fifteen years ago I entered an 18 month period of my life that included three pregnancies, two miscarriages, and the birth of a beautiful baby boy, who is now 13 years old. Like you, I became angry at God, that He would take my babies that were so loved and so wanted when there were so many babies being aborted or born unwanted. How dare He take my babies and put me through such horrible pain. I spent the entire pregnancy with Jesse mourning the two babies I had lost, angry at God, afraid that He would take this baby as well. There was danger for him because of my previous pregnancies with my older two children, and I kept thinking, "Just get him out of my body where he can be safe." Jesse's birth was bittersweet as I looked at him, yet remembered the babies in heaven. There were times when I thought I would rather die than live, my children here on earth still had their dad, could I truly trust that God would care for my babies in heaven?
Today I am technically the mother of eight, two in heaven, three birth children, and three adopted children ranging in age from 3 to 19. Yet even today in church as we sang the song "Better is one day in Your house than thousands elsewhere" my eyes teared up thinking of the babies in heaven where a day is as a thousand years, who didn't have thousands of days here on earth, but have a better "day" in heaven in God's house.
Know that what you feel is real and normal. Know, too, that God is big enough to handle your anger and pain. Know also that all moms, whether their kids are healthy or not, well behaved or not, go through dark, angry, and depressed times. They may hide it well, but it lurks beneath the surface of every mom. We live in a fallen world and battle selfishness, frustration, anger, and self-pity, sometimes on a daily basis, sometimes on a less regular basis, some more than others, but I don't know one honest mom who doesn't struggle to some degree. It is a battle, it is a struggle, and it goes better when we put on the armor that God has provided for us. Jesus saw the suffering of people and healed them. He also saw the suffering of people and didn't heal them. Not every person in Israel was healed while Jesus was walking this earth.
As a mom, your anger at the cause of your child's pain and suffering is normal. There would be anger at the driver of a car that caused damage to your child, why would it be different when your child was born with pain and suffering to look forward to. On the other hand, anger and unforgiveness toward God hurts you. Sharing your burden with Him and with the people who love you will lessen the load on your shoulders. I have found that honesty about your feelings allows others to be honest about their true feelings, knowing that others feel the same pain. Thank you for your honesty. As hard as it is to believe, a day will come when you will laugh spontaneously again, you will take joy in the small things of life again, the sun will shine on you again. Though the mourning lasts for the night, joy comes with the morning.

Amie in CT said...

God, please watch over the Williams Family and give them strength to overcome their anger, sadness and doubt in your amazing grace. Please bless them with the knowledge that we are all God's children and we all make mistakes but that you are always there to offer us guideance and love and strength. Please bless Jonah with a miracle so that he feels no pain and does not need to grow up with this aweful disease. Please heal him and heal his parents of their pain and grief. Please provide this family with all they need to get through not only the tough days but the good days as well.
In your Name I pray...
Amen.

Amie in CT said...

I also wanted to add that it wouldn't hurt to talk to your OB about post partum depression. It is very common especially when you have go through all that you have.
HUGS!

Anonymous said...

I think this is a period in your life when you will learn a whole lot about yourself. Stuff you might not have signed up for, but stuff you're forced to face, & you will learn deeply through this process, become So Much Stronger. Try not to despair, appreciate this time as much as you can.
I know you know life isn't fair,as you're an example of that. Your choices are limited. The ones you've made have been awesome ones. Enjoy the times when there is choice, especially for Jonah (and be selfish, make the best for you Matt and Jonah.)
I have opinions about religion too, I respect all people's.
Rachel from NJ

Patyrish said...

My daughter was born with Emanuel Syndrome. It too is a rare genetic disorder that causes SEVERE medical and developmental problems. At age five she can't walk, talk, crawl, swallow or eat by mouth.

When she was born we were told she would be severely retarded and that her life expectancy was unknown. I wanted to roll over and die. The first year of her life we spent in and out of the hospital with surgeries, close calls and near death experiences.

As a girl that was raised in church I found myself CURSING GOD. Hating him. I couldnt pray either. I would be lying if I said that I don't STILL five years later feel that way at times. The truth is, I do. Some days are better than others. Sometimes I want to throw my hands up and say the hell with God. I feel like he has abandoned us.....left Makily with this body that does not work right and NEVER WILL.

When you say you find yourself praying for 'just blisters', I get a lump in my throat. I have prayed for her G tube to just stop leaking and ripping the skin on her stomach apart. Then shook my head thinking 'isnt it bad enough that she has to eat through a tube in her stomach.....CAN YOU JUST MAKE IT WORK GOD.....REALLY...CAN WE GET JUST A LITTLE BREAK!?!?!?!!?

I don't want to make this about me......I want you to know that the feelings you are having are normal. I know much of the 'ugly and dark' you speak of and those thoughts and feelings will make you question yourself and make the grieving worse. I read your words and I feel myself re-living that time in Makily's life.....shaking my head saying 'yes, I get her'

The hand you, Matt and Jonah have been dealt IS NOT FAIR. The fact of the matter is that there is nothing anyone can do to make this better. It's something that with time you will be able to deal with and accept. It took me five years to get to the place I am at today emotionally and spiritually. You will get there....it is just going to take time....and it's hard as hell in the meantime.

If you want someone to talk to please feel free to email me....like I said I hear myself in your words and I wish I could come there and just hug you.

You are in my heart, thoughts and prayers always.

natalie said...

Father, Abba,

I lift up Matt and Patrice with tears in my eyes. They are hurting so much right now. Their oldest son is rocked to sleep at night in YOUR arms and their younger son is hurting and scarred. Matt and Patrice are hurting and scarred. Lord, allow, encourage, Matt and Patrice to cling to each other right now as they feel their own feelings, cry their own tears for their precious son. Show them how to share this emotional burden so that they are stronger tomorrow than they are today, stronger next week than tomorrow and stronger in three months than they ever thought they could be. Lord, please pave the road for them. Please grant them a good day tomorrow. Bring their spirits up. Show Patrice something good in this... anything. Give her a glimpse of YOUR glory so she has the heart to continue this battle.

In the precious blood of your son,
Amen

Patrice,
Take heart that when you can not pray, we are praying your prayers for you. When you are weak, we, the body of Christ, are strong and holding you up. We ARE at war, constantly. All of us against the dark one, the one who sincerely wants us to fail. Every believer is struggling with faith, with their marriages, with their children, with their families. You are NOT alone in this. although we may never meet on this side of eternity, we love you and, we are bound together by His blood. Your honesty and transparency are inspirational; we should all be that way with one another. We have something specific to pray for you now.

Much, much love.
In Him,
Natalie

lauren said...

There are days/week/months when we are too low to pray for ourselves and our own needs. It is in those times that we can take comfort in the knowledge that others are praying for us when we don't have the strength to do it ourselves. You have people who don't even KNOW you praying for you! (myself included)

You (and Matt) WILL get through this. But you don't have to get through it alone. You don't always have to be happy with God. Lean on the strength of those God puts in your lives. Let them carry you. God bless.

Stephanie said...

Way to let it all out! Good for you for having the courage to tell it as you see it. So here are my points
~the Holy Spirit intercedes for you when you have but gutteral groans to share..and God gets it!
~there is no good in ANY of us that doesn't come from Him!
~I am proud of you for acknowledging that this IS an attack on you and your husband. Which also means "this, too, shall pass" and you will be closer to eachother and to our Comforter in the end! Stinks now, but oh, glory!!! What tomorrow may hold!!

Anonymous said...

Can't even begin to relate to you in the struggles you are having with your son. But I can say I've walked many similar journeys as you are walking with your faith being low. I get it, God gets it. The great thing about our Lord and Savior is that we are loved unconditionally through all of this. All Glory and Honor to HIM! He is the same today in your lows as he has been in your highs. Still there, loving you, waiting for you. I just said a prayer for you and your family and I have written your names in my prayer journal to continue to do so. God Bless you and your lovely family, from someone who just happened by your blog today.

Beverly said...

Precious Patrice - when the apostle Paul wrote that passage in Ephesians he was in prison in Rome (possibly chained to a Roman soldier). That's why the symbolism of the soldier's armor would have been a natural illustration for him to use.

Did you know that the shield the soldiers of that time used, were often made with grooves along the outer edge? That way, when they were most vulnerable in hand to hand combat, they could interlock their shield with other soldiers to form a more impenetrable line.

Patrice, you may not feel like you even have the strength right now to hold up your shield of faith. But, sweetie, can you close your eyes and picture a whole line of your sisters in Christ interlocking their shields of faith and forming an impenetrable line to deflect the arrows the enemy is shooting at you? That's what we are doing as we pray for you, you know. Why do we know how to pray for you? Because you are honest enough to share from your heart. So kudos to you, kiddo. Keep being real - let us pray for you when you don't have it in you to pray for yourself.

And, I just have to add an "amen" to all the commenters that are telling you God is big enough and loves you enough to handle anger, hurt, mistrust or any other emotion you may have. HE IS!! And, He loves you with an everlasting love.

Praying for you in Mississippi.

Jennifer said...

I am praying for you guys. Doubt and anger are difficult. Let us interceed on your behalf!

Staci said...

Patrice,
Praying for you, Matt, and Jonah. I saw that some commenters suggested talking to your doctor about how you are feeling. It wouldn't be a bad idea.

dg darling said...

Prayers for all of you...all the time. On top of prayer, if you need it, counseling and anti-depressants have really helped me through the lows...

Jen said...

Today in church we sang "Sing to the King". We sang "For his returning we watch and we pray. We will be ready the dawn of the day. We'll join in singing with all the redeemed, SATAN IS VANQUISHED and Jesus is King.! We were whooping and hollering during the song!

Praise God for the HOPE you have (regardless of whether you feel hopeful or not!) that one day Satan will be gone, God will reign victorious, you will hold sweet Gabe again, and Jonah WILL be healed! Hugs and prayers!

Courtney said...

Standing in the gap for your family in prayer!!

happygeek said...

There have been times when i have been unable to pray. The anger is too great. The prayers of other's held me through when I wasn't even sure there was a God who cared.
I will be one of the others for you.

shoutingforha said...

There have been many times in my life when I have found myself in a dark valley, fists raised in the air, screaming my head off at God. He knew I was angry, frustrated, hurt. He let me vent all of the blackness from my heart and wasn't phased by any of it.

God knows the way that you are feeling and isn't freaked out by any of it. He looks into the deepest parts of your heart and isn't surprised by what He sees. God loves you, Matt and Jonah more than you can imagine.

It's ok if you are unable to pray right now. Know that there are strangers out here that are standing in the gap on your behalf.

Juliet said...

I am new to your blog but wanted to tell you it's ok to be where you are. It's natural and expected. The fact that you readily admit being where you are and are so aware of it means Satan has not gotten you and that you will get to a better place...in time. Be patient with yourself and focus on what really needs your attention right now...the rest will fall into place. God bless!

Julie said...

I just wanted to let you know I'm praying for your tonight...always.

Nancy said...

Prayin' in PA!
{{Hugs}}

ashpuck said...

My heart feels so many things for you right now but I can't put it into my own words. I came across this and thought of you.

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

I can't imagine the pain your heart must feel when you see your baby in pain. I can't help but think that it must be similar to the way God feels when he sees you hurting so badly. He loves you Patrice. Hold on to Him with all you have.

Praying for you~
Ashley

Penny said...

Thank God for intercessory prayer! When my teen-aged daughter was struggling with depression, overdosed twice, and then drank herself into ICU, I had a very hard time praying. It wasn't so much that I was angry at God-- I just didn't know what to pray and wondered if He was hearing me! Three years later, I know He was. She is now a mom and hasn't touched alcohol, drugs, or cigarettes since her pregnancy test was positive! People prayed her through and that's what all of your family and friends are doing. Even your blogging friends. Don't beat yourself up. You're doing the best you can, especially by asking for help. =)

The Brocks said...

Sweet Patrice,
This is my first comment on your blog, and I don't want it to be things that you don't want to hear so I am going to simply pray for you!

Precious Heavenly Father,
I want to lift Patrice and Matt up to you right now. I don't know everything that they are going through right now, but I have had some of the same feelings that she has had lately. I can relate to her when she says that she is mad and wants to pout and whine! Life is SO unfair, but Your ways are not our ways, Lord. And your plans are not what we have planned. Give them a Peace that passes all of their earthly understanding. Give them enough strength to get through tonight, and enough hope to face tomorrow. Holy Spirit, please come intercede on their behalf and lift our prayers to the Father for them! Please bless them tonight! Amen!

Stacy aka Fahiima said...

I would suggest reading the Psalms. One of the things that I always notice is how directly the Psalmists speak to God and let him know that they feel abandoned. Don't be afraid to voice your complaints to God, he will always answer you.

Anonymous said...

God is not punishment...he is the light. Bad things do happen to good and faithful people. Your understanding (and ours) will come in His good timing. He is the light and I pray for peace in your soul and strength for your marriage.

Mimmy said...

This is going to be my prayer for you:

God, she has had enough. Either take the physical cause of the pain away or make her see that she does have the strength to handle it. She needs your comfort. You know what she needs to feel calm and in control. Give her that blessing. You know what she needs to handle the every day stresses and pain. Give her that blessing. You know many other blessings that she needs that I don't even begin to know how to ask. God, give her those blessings. God, you are most awesome and you know what we all need even before we ask. Please Lord, give us those blessings. In your Son's name, Amen.

Love you to Heaven and back,
Aunt Joyce, aka Mimmy

Anonymous said...

Hi, I don't know you, just stumbled across your page but your story is inspiring. I have to tell you this though...One time when I was younger, I was sick for 5 months and I couldn't eat solid food. Lost 40 lbs, and failed a grade of school. I know that anger and frustratment of not knowing WHY (we never figured out a reason). I know its much different from your story but the ending is the same. Anything in your life that seems to be going wrong... It WILL get better. You just have to try and not think about the negatives. I know that must be nearly impossible, but think about all the great things you have in your life. A beautiful son, a loving husband, a home, a dog, an income, a car, food on the table. I will be praying for you tonight, and I pray that you will feel the Lord's embrace. If all else fails in life, Jesus is there.

Sarah @ Thrifty Decor Chick said...

OH my goodness, I said a prayer for you. Mothers of perfectly healthy children have SO MANY MOMENTS that they are not proud of. So many moments of guilt. Of course you are not only what we "see" here... you are normal, you are a wife and a mom. You are a mother of an extraordinary child who has to deal with extraordinary issues. I would rather let you vent your pain, frustrations, guilt here than you keep it bottled up. You are NORMAL. Your life may not be now, but the way you deal with it is NORMAL. It sucks. You are pissed. I am pissed for you. It's OK. Ask for a prayer whenever you need to, we have plenty to give.

Stephanie said...

Praying for you,Matt and Jonah tonight!!!!!!!!!!!!!! and sending love your way!

Becky said...

Just wanted you to know that I'm praying for you. Wishing you peace and comfort.

godfrey said...

praying for two amazing HUMAN beings and their sweet baby boy.

Anonymous said...

Thank you for allowing me to carry part of your burden to Jesus for you. God knows you are hurting, and he hurts along with you; your tears are His, your pain is His. This fallen world was never in His perfect plan, but thankfully and by grace, we are ALL sinners saved.

Praying for you in Michigan...

Beth

Sara said...

(((((((Patrice))))))) ((((((Matt))))))

I don't know the steps you've taken in your own personal nightmare, but I've walked my own. I know what I do far too often, hanging out in the lonely, frightened, reading things I shouldn't read, thinking things I shouldn't think, feeling the weight of guilt for things I had no control of. Mostly, just wishing I could go to bed, excape from such a vivid reality. Maybe forever, at least until it doesn't hurt anymore.

Everyone says it isn't healthy to dwell. They tell you your strong (and sometimes it feels they expect strength from you) they tell you God has a plan (and you can't imagine how in the world God thought it would be fine to tear your world into shreds to better God only knows what). When things don't get better over night (some) people get tired of hearing it.

It is what it is. You don't choose to wallow, don't even want too. When life is two steps forward and three back you can't help but wonder how long it will be before your too far away from everyone else to catch up.

When it's your baby, there should be no bitter, only sweet. But sometimes it goes so wrong.

***

Have you read the book Lit? I know you don't have time laying around on the shelf waiting to be used. But I highly recomend it for the angry, and broken and bitter. When you have a minute, or ten. It helped me in ways I can't even explain.

If you haven't got it. Let me know somehow (email me swindsor2007 at yahoo dot com) or just say you don't have the book on here and I'll buy one and send it to you. I'd send you mine, except I wrote all over the margins so you'd have to read my thoughts lol.

***

Mr Jonah is never far from my mind. I hate it for you that that gorgeous little guy has been given way more than anyone ten times his size should.

I love you all and pray for you daily. I'm glad I "met" you here.

The Alger Family said...

Praying for you.

the-mommy-person said...

You're right. The only good in you is Jesus. Tis the case with us all. I don't know what's going on but my husband and I have gone through seriously hard things; including loosing a child. But almost just has hard were 'issues of trust' between my hubby and I. All I can promise is that if you will cling....CLING to Jesus, you and Matt, that God will bring you both through. But it will be hard and hurt and probably leave bruises. But don't DON'T give up or let go of Jesus OR each other. Prayers.

Anonymous said...

I'm not going to send any platitudes. Just a big hug and extra prayers for all of you.

Grandmaof6

Erica said...

Oh, how I feel your raw emotion here. I walked through so many of the same feelings when our son was born 2 months early with lots of issues that lingered though most of his first year of life. I just want you to know that, with empathy, I am praying.

Thomas and Jamie said...

Patrice,

I wanted to leave you a comment to let you know that OF COURSE we are praying, but I will apologize for not letting you know sooner! However, just wanted to see if you had ever heard the song "The Warrior is a Child" by Twila Paris...I think you'll find it pretty appropriate for your feelings...or maybe not, but it's always been a favorite of mine! Hold Fast and cling to our prayers!

Jamie Allen
Canyon, TX

Misty said...

Praying for you!

Laura A said...

Hi Patrice-

I'm not sure you'll even see this one, since 166 people have posted before me, but I did want to offer you what little encouragement I can.

I don't have any special words to say, but wanted to let you know that I'm fervently praying for you and Matt. Praying that He will heal your broken hearts and bind you two together as never before. Praying that He will draw you near to Him (even though that's not what you want right now). Just praying.

Whatever you do, please don't hold any of your emotions inside. Let them out - just as you're doing here. Tell Matt exactly how you feel. Tell God exactly how you feel. They need to know.

I feel like such a jerk giving you advice, because I know I'm in no way qualified to do so. So I'll be quiet now. Just know that I'm praying for you - along with everyone here.

Love,
TX Laura

Angie said...

I think it's ok to be upset with God. It's just like when you were a child and got mad at your parents and said you 'hated' them. They knew you were just mad and upset and really didn't mean it. Right now God knows you're hurting and are frustrated and I think it's ok to be mad. I would be too if I were in your shoes. And this is probably just one of the many times you will feel like this. We'll just keep praying for you and your family and keep pushing on. That's all you can do.

In Christ,
Angie

Bethany said...

It's been awhile since I've left a comment, but I've been checking your blog often. Just wanted you to know that I am praying for you.

Jenifer Parris said...

Patrice, you and Matt and Jonah of course are still in my prayers. Girl, we are human...even though we might not be going through exactly what you guys are right now...we've all had those moments...what a big God we serve...He can TAKE it! He can take your feelings, your emotions towards Him, the pain you feel and work it to His good. In His time. Just think, He's seen Jonah years down the road and is privy to all the good things to come not just the bad of right now. Don't you wish He would just shoot us an email every once in a while and let us know what good things are to come?

Can't wait to be seeing pics of your little man doning all the firsts of childhood, maybe not ready for the teenage years...they grow up way too fast! =)

You go ahead and feel just how you want to feel...no explanation needed...He knows...

Anne said...

As the mother of a special needs son for the last 28 years I have never been comforted by hearing about being an inspiration or that God chooses special mothers to have special children. Such crap.. I imagine that these kind of sentiments do not comfort you either.

I am comforted to know that "Jesus wept" , that upon hearing about Lazarus. Jesus weeps with you. He weeps with me.
It is so wrong that your little boy has to suffer. And I pray that he will be well. TO God be the glory. Amen Btw, Jonah is a beautiful child.

Anonymous said...

I happened upon your blog and in reading this post I have to tell you a story that I can relate to. No tragedy, just an unruly child who I was at wits end with. He was constantly angry with me and said alot of very hurtful things that hurt to the quick. One day he did this in the psychologists office and I broke into tears. The psychologist very gently asked me if I knew why he was doing this. I said no and he said it's because you are his mom. He knows you love him, he knows he's safe with you, he knows that no matter what he does that will ALWAYS hold true. He needs a place to unleash his fears, anger, whatever and you are safest. I understood then. Oh, it still hurt and seemed a bit unfair but I understood all the same. I remind myself of this still. If I can get it I guarantee God gets it 1,000,000 fold! May God grant you & your family peace, love, joy & patience.

Fer said...

Hola! Soy de Mexico y he leido varias veces que sabes español por eso decidi dejarte un comentario en español, porque es mucho mas facil para mi hehe!
Es normal que estes enojada, un hijo es lo mas maravilloso que te puede pasar en la vida y el amor mas grande que puedes sentir. Y verlo sufrir y con dolor es algo que nadie quiere ver nunca. Se que harias lo imposible para quitarle ese dolor pero puedes estar segura que Jonah vino a este mundo con una mision enorme y que tiene unos papas que lo quieren con toda su alma. Eso es todo lo que el necesita para ser feliz :)
Tu bebe es un milagro y ademas esta precioso de verdad! Dios nunca da nada que sepa que no podemos soportar, ten fe y cree que tienes la fuerza necesaria. No te sientas mal por estar enojada, es normal y yo estaria 100 veces peor!
Hay muchisima gente resando por tu bebe y por tu familia, yo hoy especialmente voy a rezar para que encuentres la fuerza que necesitan tu y tu esposo.

Rebecca said...

On my knees for you right now.
Love and hugs to you from Michigan.

Anonymous said...

My situation is not the same(my daughter was born Milk/Soy protien intolerant), but I have recently been where you are, and only just now am starting to see a glimmer of hope on the horizon. The valley is not a fun place to be. I will be praying for you, not as much as I once would, but from a heart that bears a small bit of the pain that you are dealing with. Many hugs in Jesus' name, Lesli

Krystal said...

Oh honey, I hurt for you and am praying for you.

Shari said...

Patrice, I hear you. I have been right where you are at right now. It's real and it's OK to say these things. I am praying for you and your husband and Jonah. I pray the Lord will build a hedge around you to protect you from the darts of the devil. God knows exactly where you are right now. As Christians Jesus tells us to help bare the burdens of others. I am doing that. I love you and I will keep praying!

Anonymous said...

I have not posted here before but have been following Sweet Jonah's journey. Thank you for sharing it with us. I will pray harder than ever....when you feel weak and beaten down and discouraged, as your Sister in Christ I will lift you up. I promise to pray fervently for you this week!

Anonymous said...

Faithfully continuing to pray for you, Matt and Jonah! As many others have said, you are going through the grieving process and it is a process! And it is painful! I have been through it too! God is not put off by our emotions or feelings or sin, He is there constantly bringing each of His redeemed children faithfully through it! He sees you in Christ and therefore He will never leave nor forsake you. He will bring you through this, and as I can testify to, He will reveal more of Himself to you. Which will be glorious. That being said to give you a teeny tiny speck of the light (called hope) at the end of the tunnel. Hang in there girl! Walk on those waves of the storm and keep your eyes on Jesus, and you will not sink, as Peter did when he looked at the waves (circumstances).Matthew 14:22-33
I am praying that the Lord will keep sustaining you and you will sense His presence in all the various things you are going through. You are much loved!
Luann

mrs. mari said...

i have been so mad at god that i can't utter his name. i can't walk past a church let alone step into one. i have screamed at him from the top of mount baldi (near my home.) how could he allow this to go on. it's not fair. it's cruel beyond reason. beyond words.

i think is a big enough to handle the anger. who else are we going to get so mad at when it's so out of our control?

i would encourage you to seek counseling--not pastoral. my husband and i sought out a marriage counselor to help us and it worked. we were able to finally talk about it all especially the anger and fear we each felt. it helped a lot.

Anonymous said...

I just wanted to say I am praying hard for you tonight. I'm glad you posted. When you are feeling down that is what your brothers and sisters in Christ are here for. Thank you for your honesty. Sending you lots of love from Phoenix.

Ashley

Joyfulsister said...

Aloha Patrice,
It's okay, I know the Lord understands and he knows we are still human and have these kinds of emotions. I guess that is whay he had to experience life for himself when he came to earth. There are just somethings we will not be able to comprehend or understand enough on this side of heaven. I deal with an incurable illness and there days when my emotions sink and others when I have to just decide to make my day a good one or not, most of the time I choose to make it one filled with finding things to be grateful for. Please know I will be praying for you and dear husband it can surely take a toll and we need to ask for prayers for ourselves as well.

Blessings of Hope and Healing..
Lorie

Bethany said...

Hello! I have been following your blog for awhile, and have loved watching your son grow. He seems like such a sweet boy.

I have not walked in your shoes, but I would like to share with you a few things that are on my heart.

Two weeks ago, I attended a funeral of a 6 year old girl, the daughter of a close friend. Friday, May 1st, she was at recess on the playground of her Christian school...sitting there with a friend. Suddenly, with no warning, she collapsed, and fell to the ground. By the time the teacher reached her, she was gone. After trying in vain to resuscitate her for 2 hours, she was pronounced dead. My friend went home from the hospital with an empty backseat that night. The books that she had read on the way to school that morning still in the car...coming home with her backpack and belongings from school. Coming home to her bed, little dresses in the closet, and a quiet house where just 12 hours earlier, she had heard the laughter of her precious daughter.

At the funeral, as I hugged her, she whispered in my ear, "God is good. All the time." What a testimony, and a blessing she gave to me. It isn't fair that she buried her daughter. We will never know or understand why He chose to place her in such a loving family only to pluck her out of it before she even left first grade. But He did. His ways are so far above our own that there is no way we can understand them.

For everything there is a reason. I know you have heard that about a billion times. And there is a difference in having a head knowledge of something you know to be true, and a heart knowledge. Sometimes the two don't line up.

But God is Good. All the Time. That is all we have to know. Nothing else. He is Good. All the Time. He makes no mistakes. Your faith now has to take over. You may never understand why God chose to give your sweet, innocent boy such a burden in this life. It seems unfair and brutal, and like no loving God could allow that to happen. But He knows. And there IS a reason.

Six years ago, I lost 2 of my closest friends in a grisly car accident. One family chose to lean heavily upon God, to accept that His ways are not our ways, and that He is right--no matter what. The other family rebelled against God, became angry, and pulled away.

The first family sang a special song today at my church, followed by a beautiful testimony, and how God used the most horrible time in their lives to draw them closer to Him (their son did not profess to be a Christian). What a beautiful thing came out of something so ugly.

The second family has had nothing but hardship for the last 6 years. They lost their home. Their business, all the while ruining their good name in our small town. They even had to relocate to escape their bad reputation.

Both families were upstanding Christian families before the accident.

One chose to be bitter...the other chose to be better.

At the funeral of the son of the first family, they had a song called "Trust His Heart." You should download it and listen to it. Here are the lyrics:


All things work for our good
though sometimes we cant see how they could.

Struggles that break our hearts in two sometimes blind us to the truth.

Our Father knows whats best for us;
His ways are not our own.
So, when your pathway grows dim,
and you just cant see Him,
Remember Hes still on the throne.

God is too wise to be mistaken.
God is too good to be unkind.
So when you dont understand,
when you dont see His plan,
When you cant trace His hand, trust His heart.

He sees the Master plan.
He holds the future in His hands.
So dont live as those who have no hope.

All our hope is found in Him.
We walk in present knowledge,
but He sees the first and the last.
And like a tapestry, Hes weaving you and me to someday be just like Him.

God is too wise to be mistaken.
God is too good to be unkind.
So when you dont understand,
when you dont see His plan,
When you cant trace His hand, trust His heart.

Sorry for the book I wrote. I hope something I shared was an encouragement to you. I am praying for you!

as written by Barbara said...

Patrice,
Praying!


Barbara Lyman :o
Marysville, WA

Anonymous said...

Every one of my kids has had survival issues. I miscarried one baby. The rest are all miracles. I believe in miracles. People look around for miracles, instead of looking at themselves. Can you believe how amazing it is that you are alive? I can hardly believe how amazing human beings are. When you feel that you can no longer handle your burdens, turn them over to the Lord. He will send angels. Gabe is there. God Bless.

Anonymous said...

Honey, you need to talk with a professional counselor. This is too much for you to handle alone. You need to let go and let God. Let your grief go. Please see someone.

angie gutshall said...

My heart & prayers go to you and Matt. I know I can't say I know what your going through but God can. Just don't forget He does give us more than we can handle even though it seems like it. I will not stop praying for all of you.

Anonymous said...

Merciful Father...
I lift up to You my sister in Christ Patrice. Though I have never met her, my heart aches for her. Lord, I pray that You will be her Stength and her Shield. Her Strong Tower, her Abba. Lord, I pray You will give her faithful encouragers all her road Lord and people who will pray for her. Lord You are the Beginning and the End. You are our Everything. I pray that You will make Patrice and Matt strong in You. Bless their marriage even in the midst of battle Lord. Thank You Lord for giving Patrice the wisdom to see that it is a spritual battle. I pray You will give her the courage to put on her armor everyday. Thank You for the Mommy she is to Jonah. We love You Jesus. Amen

Praying for you in Tennessee.
Love, Lisa

Anonymous said...

Patrice,

I have been reading your blog for quite some time and have been touched in a way you will never know. Even before this post I always pray specifically for you --a "mommy's heart" is just so different and I often wonder "how does she do it?" I have tears streaming down my face even now as I am lifting you up before our Heavenly Father... He knows, He loves, and He understands! I love you dear Patrice and your family even though we've never met and probably never will this side of Heaven, but know when I pray for that your precious baby I ALWAYS pray specifically for you. Love you and wish I could give you a big hug!

Anonymous said...

These tests have come to prove your faith and to show that it is good. Gold, which can be destroyed, is tested by fire. Your faith is worth much more than gold and it must be tested also. Then your faith will bring thanks and shining-greatness and honor to Jesus Christ when He comes again. 1 Peter 1:7
In the last few months I have looked at this verse almost daily. I currently have a 2 1/2 year old that is going through chemotherapy. Please know that you aren't alone. God's grace is amazing. Stay strong and "Let go and let GOD!"

Sarah from MN said...

Patrice & Matt...now more than ever I urge you to cling to the beliefs that Paul talks about in Colossians 1:10-14. 10And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, 11being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully 12giving thanks to the Father, who has qualified you[d] to share in the inheritance of the saints in the kingdom of light. 13For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, 14in whom we have redemption,[e] the forgiveness of sins.

He is before all things and IN all things whether we "feel" it or not. I read somewhere something like, "would you be scared if you knew God was in the next room?" No, probably not.....well he's in the next room. He's with you right now and my prayer is that you would feel his presence more than ever before and he would strengthen you so you can withstand attacks from the enemy.

Praying....

Dre said...

Hey Trees,

When I'm angry, hurt, and to be honest just pissed with God this song has helped me to wade through my feelings and get back in touch with him. It's sung by a whole bunch of people (Tod Agnew, Mercy Me..) but I like the version with Todd Agnew..there's more passion to it. If you get some time look it up. I put the lyrics below.

Drea and I love you guys and pray/cry for you daily.

Dre


When I cannot feel, when my wounds don't heal
Lord I humbly kneel, hidden in You
Lord, You are my life so I don't mind to die
Just as long as I am hidden in You

If I could just sit with You a while, if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while, I need You to hold me
Moment by moment, 'till forever passes by

When I know I’ve sinned when I should have been
Crying out my God and hidden in you
Lord I need you now, more than I know how
So I humbly bow, hidden in you

If I could just sit with You a while, if You could just hold me
Nothing could touch me though I'm wounded, though I die
If I could just sit with You a while, I need You to hold me
Moment by moment, 'till forever passes by

If I could just sit with You a while, I need You to hold me
Moment by moment, 'till forever passes by

Moment by moment, 'till forever passes by

Kathy said...

We are continually praying for you and your family. You're on our church prayer list here in Alabama. I don't even begin to know how you must feel, but I can imagine it would sound just like what you posted.

God be with you, Patrice. I hope you are able to have more up days than down.

Betsy said...

Being angry toward God is OKAY. If you weren't angry, then that would mean there was NO relationship. Since you do have that relationship, it is natural to be angry. The Bible says "Be angry, but sin not." (Psalm 4:4) In the Bible, it's okay to be angry. Jesus even expressed angry and frustration, "My God, my God, why have You forsaken me" (Matthew 27:46) So, if the Son of God can be angry at God, then most certainly YOU can be angry at God. Anger will build your relationship. Trust in God that He will get you through this angry the same way He has gotten you through everything else! It's okay to be angry, but it's NOT okay to lose trust. If you lose trust, that's a sin. Trust God through the anger, trust Him above all else because "God works all things for the good of those who love Him." (Romans 8:28) The only way to get over anger is 1. to admit that you are angry and 2. to await a response from the One with whom you are angry. "This calls for patient endurance on the part of the saints who obey God's commandments and remain faithful to Jesus." (Revelation 14:12) Just trust in God and try to be patient and He will get you through.

--Betsy Hough--The 432's class (Dale Hancock's new class) at Pinedale is praying for you every Sunday (you are on our prayer list at home too)! We love you! Please come to visit us sometime when you are at church! We'd love to see Jonah in person!

Lis said...

I have been in a place of anger, frustration, not understanding why.. Why.. Why... It's not a good place to be, but when your there, your there. I can only tell you what helped me, I found an incredible Christian counselor. Found them through a church, there was not cost, but the value of those sessions was priceless. Consider this for your situation. It's a third party that you can pour your heart and soul to that can give you sound, Christian based advice. Praying for you daily from south Alabama..

Channe said...

I'm praying that God will give you strength & supernaturally protect your marriage while you & Matt are in such a vulnerable time.

Amyb99 said...

I just wanted to come out of my "lurkdom" and say that you are all constantly in my prayers. I pray for healing for Jonah, for strength for each of you and for God's peace to surround you at all times. I pray. Even though I do not post, I pray. Thank you for sharing your sweet, beautiful little boy with all of us.

Know you are thought of and prayed for often. God bless.

Amy in PA

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